Gratitude

Iva passed away 2 weeks ago now.  How is it that it has been that long already?  14 days we have now lived without her.  Without receiving the joy of her smile.  Without worrying about her.  Without anxiety about what is going to happen next.  The relief brings guilt.  The loss, of course, bring much sadness. 

So in this time, we have been dealing with all the grief, and trying to decide what our lives are now going to be like.  Our daughters have only known their lives with Iva.  She has been with us for nearly 2 years, and in their short lives, that represents a good portion of their memory.  Yet they have not skipped a beat.

On the day after Iva's death, our youngest, Maja, was still looking for her.  "I'm going to see if Iva is sleeping in her room."  Then she decided that Iva had turned into a butterfly and had flown up to heaven.  The next day, Wednesday, we buried Iva at the Serbian Orthodox Cemetery in Galveston.  When we got home that afternoon, Tony found a butterfly on our back door.  The butterfly let him pick it up and carry it about for a bit.  He then set it free.  Pure magic.

It's strange that in all this time everything boils down to just a few memories.  Iva making pasta.  Iva cheering while watching soccer.  Iva explaining friendship to our oldest daughter, Milena.  Iva being completely enamored of Avatar in 3D (she watched it 3 times, at least!).  Iva cutting cabbage.

We now only have memories of her.  Memories of her before she was sick.  How she loved the sea.  How talented she was.  How she loved simple things.  How well she could pack a suitcase.  How loving she was.

And then there are the memories of her being sick.  And how it changed her.  When she was first diagnosed, she struggled to understand why this had happened to her.  She thought it was something she had done.  Maybe she had been too prideful, which of course, was a prideful thing to think, right?  To think that any of this tragedy had anything to do with you?  To think that somehow the forces of fate had singled you out?  But that was Iva.  Flaws and all, you couldn't help but love her.   She was the bravest woman you will ever know. 

And then there are the things that we can't remember.  Like her favorite Starbucks coffee drink.  All these silly day to day details that suddenly become so important because she is gone.

And then there is the guilt.  The guilt for not always understanding how hard this was for her.  For expecting her to be more this or less that.  For not hugging her more.  For not saying more of the "right" things.  For not making her cookies more often.

But in the end, we are left to resolve all that it meant and all that we didn't do.  We have to go on living and doing all the things she will never do.  And yet in all of this, gratitude fills me.  I am grateful for how much we have received from all of you over the last 2 years.  How much you have shared with us, how much you have prayed for us, how much you have just listened and supported us.  How much you have opened your hearts to our family, some of you complete strangers.  It is really quite astonishing.  And then there are the donations--from so many of you--and without which Iva would never have been able to receive the treatments that kept her here with us for so long.  We will always be grateful for that.  Just as we will always miss her.

The Ending

So most of you probably have already heard that our Iva has now left this earth.   She died at home this past Monday at 9 in the evening.  We were all here with her.  The priest came, and then she passed.  I have had no perspective, and so have been unable to write.  This is all I can manage now.

Laku noc

Iva was sent home from the hospital today. She still isn't feeling well. Right now there is no plan of treatment. We'll see how things go. . .

We started decorating the tree tonight with the girls. Unfortunately, Iva could only watch. Back to bed she went.

Here's to hoping her first night back goes smoothly and that she rests well.

Laku noc.

Cheeseburger

Iva is still in the hospital. She is coming home in a couple of days, they think.

She wishes she felt well enough to eat a cheeseburger.

So do we.

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Thanksgiving

Slava on Sunday.

Back in the hospital very early on Wednesday.

Still there for Thanksgiving.

Brief home visit

I just brought Iva home. She will go back on Monday for another surgery. For now she gets to rest here, in her own bed, which I hope is enough as that is about all the good I can find right now.

Out

Iva is out of surgery. Pain. She may be home in a couple of days or so.

Well looks like she will need more surgery on Monday. Tubes aren't working.

Back in the Hospital

Iva is back in the hospital. Will have a second tube placed in her left lung tomorrow.

Anniversary to be forgotten

Wordless Worry

MD Anderson has decided that the cancer is spreading and radiation is not an option. The area is too extensive. There may be some clinical trial option, but no details on that yet.

The suffering the mother endures that has no words.

Reunion

Things have not been going well, in general. Iva has been feeling bad. She drained over a whole liter of fluid from her tube today. The home is missing a component and it is not functioning well. So tonight we bought a ticket and tomorrow at this time, Tony will be home!

Home

Iva is home. Still has the drain. The doctors are clueless. Another trip to MD Anderson will hopefully clear some things up.

Still

Still in the hospital. Maybe tomorrow.

Unexpected

Iva went in yesterday for additional draining of the fluid on her lungs since it has come back after the last procedure. Today she went in for a follow-up appointment, and her lungs were found to be full of fluid and blood. She was admitted to the hospital and is currently waiting to be settled into a room.

They will place a drain in her chest and keep her until she feels better. The last couple of weeks she has been feeling dizzy and short of breath. She has been fatigued and having lots of pain. No appetite and all that.

Our biggest concern is the bleeding. Her first tumor developed a large sack of fluid around it called a hematoma. This tendency to cause bleeding is a component of her type of sarcoma. Telangiectatic features, they call it. Worrisome to say the least.

Changes

We have been undergoing changes in our household. Antonio has left us, seeking an opportunity for a life. Living here, in these walls, has not been much for him. No progress. No chance at independence. He will be missed for the lightness and stability of mood that he brought to this home of ours, but I will not miss seeing the toll it has taken on him. Watching the life being slowly sucked out of him, the aging it has caused, has been unpleasant, to say the least.

Iva goes in tomorrow for a minor procedure. They will be draining some fluid out of her left pleural space.

And in the meantime, we wait for more bad news (or not).

Mobile

Iva is gaining more mobility. Her pain hasn't changed much, and she still is tired most of the day.

Today, she went to have her stitches taken out. We are waiting for her to come home.

More later.

Fever Patrol

As parents, fevers are usually cause for concern, especially in very small children. It can keep you up at night, you worry when the medications don't work, and sometimes, if you are super unlucky, you end up in the ER.

Take all that concern and multiply it by 10--that is the concern we have when Iva even hints at having a fever. Today she developed a low grade fever and pain in her right chest with breathing. You pray for the best, and think of the worst. So far, we are not heading to the ER, but everyone is expecting that at any minute, that can all change.

We shall see.

Take 2

Iva came home yesterday. She is still here, so it looks like this time it will stick.

Still lots of pain, fatigue, etc. But each day there is slight improvements.

Next week we go back and see the surgeon to talk about the next step. She did not tell Iva any results of the pathology--only that she would tell her on her follow-up visit. We have all pretty much figured out what that means.

Sadly, one of Zoran's co-workers was recently diagnosed with liver cancer. The doctors have told him he is not a candidate for a liver transplant because of the location/size of the tumor. He is seeking a second opinion. Ray, our hearts go out to you and your family. This disease is hell, we know. It never makes sense, and it is always unfair. Everyone is waiting for their own miracle. Sometimes miracles are incredibly small--like finding the strength to get up and carry on as usual. And sometimes miracles can be enormous--being cured. We pray for enormous miracles for Ray, for Iva, and for all those endlessly suffering in this world.

My hope is that we remember that is not for us to understand; that all this somehow is as it is suppose to be. That we do not begrudge others their victories and happiness when we have none ourselves. That we remain grateful for all that we have been left with. That we never run out of the ability to give. To never be dry and resentful.

Baby Steps

Iva's stay at home was short lived. She came home Friday afternoon, and by midnight that night, we were back at the hospital. Her pain was raging and the medications were not working. She started getting IV medications again, and she has been feeling better. She sat up several times on the edge of her bed and stood up for a brief period of time. Baby steps back home again we hope.

Home Again, Home Again

Iva is home! She hasn't left her bed, but she is here!

Tonight will tell if the drugs they sent her home with will do the trick. On another positive note, they only cost $65! We have fallen in love with the Professional Building Pharmacy here in Clear Lake by the Medical Center. If you ever need any medical supplies, just ask for Ernest. They have a real pharmacy where they do compounding and everything. Ernest has taken great care of us and he is just an all around outstanding human being.

Anyway, that has been one of the greatest things throughout this whole last year and a half. The people we have met that we would not have ordinarily had reason to. The people who have shared their time and resources with us, the people that pray for Iva and have not ever met her. The friends who bring us dinner despite the demands of their own lives. The friends who take our daughters for a day so we can be at the hospital with Iva. The friends who tirelessly pass the word around of Iva and her fight. Those that never tire of listening. I don't know if we will ever have a chance to show them all how much we appreciate them, but each and every one of them has lightened our load and filled our hearts.

Sometimes we struggle to have appreciation in life, to see that there is more than just endless suffering. Each and every one of you has made it that much easier for us, and for that, we will always be grateful.

Finally

I have been wanting so badly to report something positive. For days, I have had nothing good to report, because Iva has been absolutely miserable. She was having immense pain, she was bed-ridden, and she was mentally a mess. The pain medications have been causing all sorts of problems. All the doctors have been really mystified, truly. Her last surgery was on Thursday and as of yesterday, she had not improved at all. Not one iota. I sat with her all Saturday, watching her suffer, waiting for any moment where I could see that she might be better. But nothing. Pain, hallucinations, dizziness, cryingl, suffering, suffering, suffering.

Yesterday, she finally agreed to take all medications as prescribed, to just forget that they were making her feel drugged, and as I had hoped, today she felt a bit better. They are now talking about sending her home tomorrow. YEAH!

Transfusion

I just left Iva at the hospital. She is getting a blood transfusion right now. They think it should help some of her symptoms. They decreased some of her pain medications and changed others. Double vision greatly improved, so has lightheadedness, but she is still having breathing difficulties and can't move from her bed. She is still needing oxygen.

This day has been immensely difficult and exhausting. We could all use a transfusion of hope, faith, and energy.

Sleep well sweet Iva. We will see you tomorrow!

Improvement

Iva was moved to a room last night. She now has all IVs out and the surgical drain. She is still on epidural pain meds. She is feeling dizzy and has been having double vision all day today. We are waiting for the pain management doctor to come. He seems to be the only one who has been able to help her these last few days. She is having a rough time right now, but I have been reassuring her that it will get easier. Her poor body has been through so much, it is only expected that she would be feeling bad right now.

Pain doctor just left. He has adjusted her meds. We shall see.

Day 5

Iva woke up on her 5th day in the ICU. Yesterday, they removed the rest of her 7th and 8th ribs, rib 9, and a bunch of soft tissue surrounding that (on her back, left side). They placed a piece of kevlar where they removed the ribs to provide support, protection, etc.

The disappointing part is that the margins were still positive for cancer cells. There are no formed tumors, but there are many many cells completely infecting her chest wall, waiting to become tumors. They cannot take it all out because she needs her chest wall--the muscles and such--to breathe. That is the saddest news. We really were hoping this would eradicate her cancer for a while, that she was be able to breathe, to live, to remember what it is like to be a normal 20 something woman. To be carefree, happy, hopeful again. All this we hoped for. And now, we feel. . . what? Numb. Yes. Angry. Yes. Filled with disbelief. Yes. Devoid of hope. Yes. Waiting to wake from this terrible terrible nightmare. Yes.

The world is full of injustice and tragedy. When you are young, you have the luxury (usually) of thinking it doesn't apply to you. None of us has that luxury any longer.

More Surgery

We just found out Iva will need more surgery tomorrow. The thoracic surgeon and a nuerosurgeon will go and remove a larger area of her chest wall and the two affected ribs. That is all we know for now. No word on pathology, but this must mean they didn't get a wide enough area. We have previously read that for sarcoma, it is imperative to get a wide excision for greater chance of success. Poor Iva. This is heartbreaking, really.

Still Waiting

Iva is still in the intensive care unit. We have no updates from the doctor on the pathology results yet, so we still don't know if she will need more surgery.

Basically they removed four tumors--2 from each lung. They found an unexpected 5th metastasis on her chest wall and had to remove that tissue plus part of two of her ribs--on the left side. Our theory is that the prior surgeon in April who tried to repair her collapsed lung contaminated her chest wall with tumor cells. This all because he didn't know jack shit about sarcoma and was either too idiotic or arrogant to research what the hell he was doing prior to poking around in her chest. If he had bothered to admit that he didn't know what he was doing, he could have learned that that type of surgery is the exact kind you do not do on a patient with sarcoma tumors in the lung. And for this very reason. Shame on him!

She is doing fairly well. She has lots of pain that is keeping her from breathing very deeply. This is giving her the sensation that she is suffocating, which of course, is making her anxious. She is able to talk with us for the brief visiting periods. She is drinking juice. She sat up today in a cardiac chair for three hours. She is getting an MRI of the chest tonight. Tomorrow is tumor board and they will decide what to do. If the margins of the resected tissue are clean, then she won't need any additional surgery. If there are tumor cells in the margins or there isn't a wide enough "clean" area, then they have to go back in and remove more tissue. The surgeon couldn't do it last night since she wasn't expecting it and did not have a neurosurgeon available. She will need one to assist with removal of the additional rib tissue because it extends into the area of spinal nerves and such.

Of course, we are all hoping for clean pathology results with no bone involvement. If the ribs are affected, well, let us know think of that.

ICU

Iva made it through. Found more than they were expecting. Maybe more surgery later this week. More later.

Surgery

Today is the big day! Double lung metastasectomy.

Deposit

Dropped $16,000 today at The Methodist Hospital and almost $5,000 to the surgeon. Iva is scheduled to have surgery Monday, July 26th at 10 a.m. It will take about 5 hours. The surgeon will be deflating each of her lungs. Dangerous business, but not as dangerous as doing nothing.

Approval

We have been approved for Iva's surgery, meaning, they have accepted our offer. It felt much like buying a house, which is really a crazy analogy, but it was just like that. They told us the asking price, we negotiated a down payment and a payment plan for the remaining balance. So now we have to cough up $21,000 between the hospital and doctor's fees, and then she will have surgery on the 26th. We will then need to make payments of $3000 a month until the remaining balance is paid off. The estimate for the total costs is around $50,000+.

We are hoping to kick start some fund raising again. Things have really slowed down to a trickle. It is hard to keep people excited about saving a life of someone they don't see everyday, or maybe even someone they don't know. But in addition to all of our other life duties. this is our other occupation--Saving Iva.

Please tell anyone and everyone you know who may be able to help. We have seen before what word of mouth can do and how generous people can be. She has made it this far only because people have opened their hearts to her. We can only hope that it continues to be so.

Take off

Iva and Tony left today. They should be in Macedonia tomorrow. They are staying there for three weeks. Enjoy them, Macedonia!

Postponed

Iva's surgery has been postponed until late July. The surgeon has agreed to do both lungs in a single surgery, which is riskier, but cheaper.

So now Iva is going back to Macedonia to get her passport renewed. This will also get her out of the US before her current visa expires. In the mean time, we have to negotiate a price for the surgery.

Why does everything have to be so fucking hard and complicated?

Rejected

Iva has been rejected for financial assistance from the Methodist Hospital. No surgery this week. We have some ideas, but it is hard to find energy to try.

Nothing Yet

No decision from Methodist yet. Boo!

Big garage sale today with our awesome neighbors. Made several hundred dollars for Iva. Yay!

Tomorrow

We met with the financial counselor today at The Methodist Hospital. He is going to present Iva's case to the charity board and we should have a decision tomorrow. It feels as if her life is being decided. Not the most comfortable of feelings.

Tomorrow!

Week Delay

This is what a $125 past due bill looks like. I like the threatening tone. Its really ingenious. One almost gets the sense that there is actually something they can do to Iva if she doesn't pay. According to this notice, they just can't figure out why Iva has refused to pay them. Hmmmm . . . We finally gathered the courage tonight to add up all of Iva's known outstanding bills. The grand total is only about $40,000. Add this to everything we have already paid--which is about another $180,000-- and then you start to approximate how much one year of a life is worth.

Well, onto the latest on Iva's impending surgery. She found out today that if she pays them a $10,000 deposit, they will submit her bill for their charity program. Tomorrow she is going in to give them all required documents, which includes our household income and letters of support. When considered in normal circumstances, Zoran and I make very decent money. I am forever grateful for the blessings of our jobs--what most people wouldn't give to have what we do! But, when you consider that our salaries have to support 5 adults (3 of whom have no income) and 2 kids, plus all that we have paid into her healthcare already, well hopefully, it doesn't disqualify Iva from their program.

So that is tomorrow. They have rescheduled her surgery until next Thursday to allow for time to decide if she is worthy of charity. There are three options. One, they will approve her and surgery will happen on Thursday. Two, they will miss their own deadline for a decision, and the surgery will still happen without any agreement on the bill. Third, and the least desirable, Iva will be denied and will have to agree to whatever terms they insist. One more week of agony!

Really?

We thought MD Anderson was expensive. They wanted $67,000 for the one lung surgery. No discounts, no payment plans nothing.

Enter The Methodist Hospital. They are offering a 40% discount for being a "cash" customer. They only want $65,000, plus another $3000 just for the physician.

Where do they come up with these prices? I mean, really! What more do we have to do?

Not So Fast

Well we really thought we had finally caught a break. Lord knows we could use one. And then, not surprisingly, another road block.

Iva's surgery may not happen. And as usual, money is the culprit. We thought by going to a private hospital, that they would have some sort of charity program to assist with the financing of her surgery. She has been told their foreign patient fund is depleted. Road block.

We tried to get her an American Social Security number to assist with applying with other programs. She was told she doesn't qualify to get one. Road block.

She was informed she would have to make a deposit, but no one can tell her how much the surgery will cost. She waited hours on hold. Waited hours for someone to return her call. Waded endlessly through the bureaucracy that is the American medical system. And all she knows for all her trouble, is that she will get a 40% discount and that she will have to pay an unknown portion of an unknown total amount. Road block.

Tomorrow we will have to make an appearance there to try our best to convince them that Iva deserves this chance. That this is her only chance. And that if they could just make a humane decision, rather than a business one, well, there is nothing in it for them except the peace that they did the right thing.

In the meantime, if anyone has an extra $50,000 and wants to contribute to a very worthy cause . . .

Cutting Away

There have been many theories on treating Iva's cancer. You all have shared some that you have heard of or read about. The doctor's in Austria had suggested a plan of treatment. MD Anderson, here in America, suggested another. Iva's own family members each has his or her own idea about what the next best thing to do is. Sadly, we can never know for sure who to listen to or which path to chose.

BUT--this is the first chance we have had in all this time at getting Iva cancer-free. Next Thursday she is scheduled to have her right lung operated on to remove any and all masses. Two weeks later on June 30th, she is having the left lung done. She has no other known metastases. As we found out earlier this week, the spine lesion is not a tumor. Having metastatic disease to only one body system (the respiratory) is way better than having it in two.

And why not Iva? Why is she not worthy of this miracle that we have all prayed for so hard this last year and half? She doesn't have the courage to hope for it, but I do. And why not? What do we lose? We have had each other each and every day for the last 14 months. That has been an amazing blessing. Looking back at how far Iva has come--the mere fact that getting her here when we did was an amazing feat! What obstacles! It is not too late to proclaim full victory--to cut away all this evilness from her body and her spirit. It is not too late for Iva to heal herself. To start seeing what she has accomplished, rather than what she has lost. To see what blessings she has, rather than what she has been burdened with. To start rejoicing and embracing the day, rather than cowering in fear of what the day may bring.

Goodish News

Iva met with the spine surgeon this morning. He looked at her scans and informed her that the spot on her L1 vertebra is not a metastasis! It is an hemangioma, not cancer! Sweet day.

Tomorrow is back to the thoracic surgeon to see if last Friday's CT scan supports surgery. If her lung tumors are stable (no progression since the prior scans), then surgery will be scheduled. She has been off chemo for about 2 months now, so we will see.

More to come tomorrow . . .

Fatigue

Iva got news from MD Anderson. "We are not sure," was the general consensus. "Let's wait until you get worse." Dissatisfied with that line of reasoning, Iva called the oncologist back and asked why he didn't feel being more aggressive was a good next move. He ultimately set her up to see the thoracic surgeon, the guy that could possibly remove her lung metastases. We met with him on Tues. He has her scheduled for surgery on Wednesday, June 9th. He wants to resect the right lower lobe of her lung where her largest tumor is--it's about 1 cm in size. He would then work around the rest of her lung, squishing as he went, looking for additional tumors. He calls it "palpating," but squishing is a much better description, don't you think? He would then place a chest tube in to reinflate her left lung, which still remains partially collapsed even after her last surgery. If it reinflates, he will be able to better see if there is any tumors there--again by employing the sophisticated squishing method. However, the left lung surgery would be done at a later date. It all sounded very good and promising, but at the cost of nearly $70,000 for just the one surgery, we can't afford him. So we asked if he knew of anyone else qualified to perform such an operation. He recommended someone and Iva saw her yesterday. She is at the Methodist Hospital here in Houston, which is a private hospital and therefore, has a charity program. We are super hopeful that they will not only cost less, but also that Iva can get approved for financial assistance with them. The Methodist Hospital also has a spine surgeon she is consulting with on Wednesday next week to see if he can perform the operation on the spine tumor. It is not a confirmed tumor, but they think it should be scheduled for removal, just in case.

All of this is very good, but unfortunately, no one is celebrating. Tension is high. We have all been dealing with our little bits of this tragedy for well over a year now. Fatigue is setting in.

Appointment

Just dropped the latest CT scans off at MD Anderson. We should know what they show in the next few days. We were hoping to have an appointment this week, but it looks like that won't happen. Maybe early next week. The suspense is crazy hard.

Pressure

Everyone is under immense pressure. The strain is getting to Iva. A very bad day today. Very bad, indeed. Pray for peace to find itself back with her spirit.

The Great Collapse

There has been an ongoing issue with Iva's left lung, and it isn't cancer. Her left upper lobe was partially collapsed, we discovered, about a month ago. She was not, however, having any symptoms. So she was just getting monitored with chest x-rays. The last x-ray, taken a couple of weeks ago, showed the pneumothorax was mostly resolved. Then, suddenly the other day, she began to feel short of breath. She wasn't sure if she was really feeling short of breath or if she was just fatigued. She had done a lot the day before, but around 5 p.m. it was clear that she couldn't even finish a short sentence without having to take a breath.

So Iva and I went to the emergency room and within a 1/2 hour she had had a chest x-ray and they were telling us she needed a chest tube. She spent a couple of days in the hospital. It now seems to be resolved, but there is no real explanation why it happened; no one knows for sure. Neither the pulmonologist nor her oncologist thinks it is tumor-related. For all their years of education and experience, none can say what the heck is causing her problem. Yeah!!

None of us can wait to see what happens next!

Time

Our time is measured. Sometimes in hours, sometimes in months. For us, it is measured by the distance between scans. This distance can be immense. We are trying now to enjoy this interval, this period when we can believe we are winning the war. But with every fight comes a new day and a new opportunity for your opponent to show you how smart he has become. No one is talking about it, but it is always lingering, always waiting for you when you are quiet and still. So the goal is to never be still. To always be pressing forward to the next big hurdle.

And that hurdle for us right now is surgery. We have been researching facilities that are qualified to perform the type of surgeries Iva will require. And (unfortunately) we have been asking ourselves how on earth we will pay for it. But all that will come. We pray, anyway.

We have recently discovered a charity program through Iva's cancer clinic that is paying part of her chemo costs. We will be trying to contact the maker of the other drug to see about getting it partially (or wholly!) paid for as well.

Small victory

So the kinder, gentler chemo works after all! Iva's lung tumors are half the size they were in November. For two months, we can enjoy this small victory.

More waiting

Just enjoying dinners and "quiet" time together. Iva has finished her two rounds of the new chemo and some time in the next week, we are hoping to get her new scans taken. Depending on what is going on with her lung tumor(s), they will recommend the next step. And the waiting will then begin.

Good Day

Daiquiris, fajitas, and now, lots of laughter. Today is a good day.

Home

Mimi is still in Macedonia. Still dealing with the bureaucracy of the government. Still without success. And in the end, she will have to sell the family home--the apartment that her mother owned and that she has lived in for the last years. Even if the government agrees to pay for some of Iva's care, the most they will pay is 80 percent of the estimate we gave them for two rounds of chemo and the additional scans. The trick is that you have to pay the remaining 20 percent yourself upfront before they give you their share. Hence the need to sell the apartment. It is sad to see it have to go, but what choice is there, really?

Front

Iva is feeling pretty well. Getting out some. All is quiet on the front. . .